THE WAITING ROOM and ‘Born out of death – a letter to Josh’

Jane and I are excited to announce that we have been commissioned to make a number of short films to be used by the ALZHEIMERS SOCIETY for a brand new training programme to be rolled out later this year. The videos will be made entirely from the footage we have shot over the past 5 years with Jane’s Dad (Josh’s grandpa). Gerry lived with very severe dementia for the last years of his life, but these years were spent entirely as a patient on a hospital psychiatric ward, where his care was less than ideal – far less than ideal. We now have close on 100 hours of video material documenting what this meant for Gerry, for Jane and the rest of the Harris family.

We have always referred to the project as THE WAITING ROOM and its been sitting on the shelf in my cutting room just waiting for an audience such that The Alzheimers Society can now provide. You can see glimpses of Gerry’s life in hospital by clicking on the image above. It is not easy viewing but just a year after Gerry died, we are so proud that his story can now be used to promote a better understanding of dementia, and the need for a more compassionate approach to the care of people living with the disease.

Below we are reproducing Jane’s letter to Josh which may explain a little more her feelings about how this came about:

Dear Josh

Three years now and I’m learning to live without you much better. There are those heart lurching moments when something is triggered in me and I feel the sudden pain in my heart as if it was yesterday – the sight of a tall young man with his mates, a music track, a word that you might have used spoken by someone else (‘mundane’ you said of something you were excited by) , seeing your friends now at 25 , that carefree look I see in young men in the street.

You changed our lives Josh. Its strange and circular. Jimmy and I met at film school all those years ago and then I made a decision to leave that avenue of work to train as a therapist so that we could be around more for you in the early years. And now after your death we find ourselves working together again making films with you centre stage. This website Beyond Goodbye was born out of your death. Its our way of staying connected to you and trying to make sense out of something senseless. But it has become much more than that. As well as somewhere we can gather our thoughts and memories about you, it is now a place where we can share with others our feelings of what it is like to be a bereaved parent. It’s not that we are keeping you alive in what some may see as an unhealthy way – more that we are doing something constructive and creative with what IS……we now know the best kept secret that every bereaved parent discovers – the loss of a child is not one that has a time frame (oh how obvious on hindsight!)

So with everything we now do, you are always there, including the film and video productions we are now engaged in. You were there when, under the banner of Beyond Goodbye Productions, we made SAY THEIR NAME for The Compassionate Friends. We believe SAY THEIR NAME is the only film made in this country exclusively by and for bereaved parents. And in a sad but still wonderful way, we have to thank you for that opportunity for as one of the contributors to that film says – through our work with TCF – “we have made some of the best friends we wished we’d never met”.

And when Grampa Gerry died in January last year, you were there ‘with us’ at his funeral. We showed the film of you and Joe as you skydived for your 21st birthday to raise money for Alzeimers. At that time, Grampa had only just developed the disease, the dementia had not yet taken hold. But as his and Granny Pat’s lives became more and more affected by the condition, we continued to work with them, filming on nearly every visit to the hospital, collecting material that we hoped one day might help to make a difference to way that dementia sufferers are cared for. There have been a lot of false starts with all the major UK broadcasters turning our project away. But then we screened an 8 minute version of the film to a dementia conference last December, which someone from The Alzheimers Society saw and that led to the current commission.

People often ask me what it means to see my Dad seemingly suffering so on the big screen. I tell them I’ve always being looking for something positive from his experience as I have with losing you, dear Josh. But its also true that I do have mixed emotions – Gerry’s death was in what people call the “right order of things”. Unlike you, Gerry waited a long time to die and when death eventually came it was as much a release from the terror of dementia as it was a sorrow of his passing. We want to tell his story, if only because for those who do get to grow old we want them to have the best possible care and understanding – that their last years do not become lost years.

So thank you Josh. It is largely because of you that Jimmy and I have been able to find our way back to the kind of work we love to do. And what’s good about it is that you are with us every step of the way.

with love

Mum

Jane also presented the 8 minute version of the THE WAITING ROOM at another conference, last month. “Making Sense of Dementia” at the Freud Museum was designed to find out what psychoanalysis can offer to the understanding and treatment of dementia.

Thanks for reading and watch out for further news of THE WAITING ROOM.

3 Responses

Well done you two. My mum has dementia which only really became unmanageable when we lost Simon. I also looked after my aunt (her sister) for eight years so know the agony this terrible disease can bring xxx